Keith Kelley was diagnosed with Stage IV Neuroblastoma on August 9, 2006 at the age of ten. An aggressive childhood cancer of the sympathetic nervous system, it had already spread to other parts of his body when it was discovered. After 7 rounds of chemotherapy, endless tests, and an autologous bone marrow transplant and stem cell rescue he relapsed. After 2 cycles of experimental antibody therapy the cancer overtook him and he died on August 17, 2007.

Tuesday, August 22, 2006

August 16th-22nd: Bad to Worse: PICU

WEDNESDAY, AUGUST 16, 2006 05:45 PM, PDT

Parent's Note:

Despite having completed his first course of chemo, this has not been a good day. Keith was moved from his room in the hematology/oncology unit to the pediatric ICU this afternoon. His oxygen saturation levels dropped throughout the night and by mid day the acute care nurses were unable to maintain 02 levels where they needed to be.

It is unclear whether he is suffering from tumor lysis or some form of opportunistic viris. He has been intubated with the hope that this will allow his lungs to recover over the next few days.

As I write this journal entry I do not yet know what news night will bring. They say that one should expect setbacks over the course of treatment but I think Keith is due for some good news for a change.

Hang in there Keith!

THURSDAY, AUGUST 17, 2006 10:10 PM, PDT

Parent's Note:

I'm looking forward to when Keith can begin to write these journal entries in his own voice. Unfortunately, this was another very difficult day but ended on a positive note. Keith has been listed in critical condition but is fighting so hard to stay alive.

He has been so sick that he has not been able to read any of the guestbook entries himself. So today we printed all 100 entries so far and read them to him at his bedside between all of the ICU nurses. Even though he was asleep, I know he could hear all of your encouraging words. I am sure this helped him feel better and made him want to fight harder to get well again.

The doctors are encouraged that he seems stabilized now and we are hoping that he will begin to improve. All of your thoughts and prayers are having a positive effect.

FRIDAY, AUGUST 18, 2006 08:24 PM, PDT

Parent's Note:

Finally some good news! In the past 24 hours Keith has rallied and finally seems to be recovering from the acute respiratory distress he suffered as the result of the chemotherapy. It is still not clear what the underlying cause is, but between the positive thoughts, the amazing machinery hooked up to him and a great medical team he is improving.

As a side note, Kirby (Keith's cat) had a vet appointment yesterday and he was indeed a fat cat, weighing in at 18 pounds. He is on a diet now...

SATURDAY, AUGUST 19, 2006 08:03 PM, PDT

Parent’s Note:

Another day of gradual, steady improvement for Keith. He remains in critical condition but the doctors are pleased by the way he is responding to treatment. His lungs are finally starting to clear and it is possible that Keith may be taken off the oscillating ventilator sometime on Sunday. If so, he will most likely be placed onto another type of mechanical ventilator and then gradually weaned from it over time. He is also on CCRT (renal replacement therapy), a type of dialysis that his helping him clear toxins and excess fluids from his body. Without either of these treatments it is unlikely he would have survived the last couple of days. We are so looking forward to when Keith can finally breathe for himself again and be removed from the heavy sedation he is currently under. Besides, he wants to see his hair fall out.

The ICU staff is planning to move Keith into an isolation room where he will be less likely to be exposed to germs. As the chemotherapy treatment will soon compromise his immune system, he will not be able to fight off the usual bugs we are all exposed to.

We continue to be so touched by all of the acts of kindness and concern for Keith and our family, but especially the gesture by the incredible swimmers and coaches from Park Pool who dedicated their swims in the County meet today for Keith. From what I read from Erin and Molly’s posts, the boys and girls relays swam really fast and Keith will be so happy to learn that “Go Keith!” was written on their backs!

SUNDAY, AUGUST 20, 2006 07:54 PM, PDT

Parent’s Note:

Keith has been on life support now for 4 long days. Progress continues, but the doctors are being very careful not to rush his recovery. It has been a rather uneventful day (relatively speaking) which makes the doctors happy – “boring is good” is a phrase we’ve heard more than once from the medical team. It now seems like he will continue to remain in intensive care for at least another week and on life support for much if not all of that time until he can be slowly weaned completely from the machines his body depends on. Baby steps.

We were naïve in thinking that his recovery would be as quick as his decline. Sadly, when he does recover, it will be time for his next round of chemotherapy to begin. He'll need to be strong.

It’s becoming clear to us that he probably won’t be able to come home until after his second course of chemo – at best several weeks from now.

This disease is so cruel.

MONDAY, AUGUST 21, 2006 09:48 PM, PDT

Parent’s Note:

We are new to this, but are quickly starting to get in synch with standard hospital routine. Weekend days are all about stabilizing and maintaining patients while weekdays, especially Mondays, are for making plans and getting things done. Today there was much more activity as evidenced by the full contingent of attending physicians, fellows, residents, nurses and specialists that gathered around Keith’s bed for about 20 minutes discussing his stats and planning the next steps of his treatment. We were relieved to see mostly smiles on the faces of his medical team as they reviewed his progress.

His lungs while not fully healed, are clearing and doing much more work to oxygenate his blood. It was decided he was ready to be removed from the oscillating ventilator (300 small breaths per minute) and placed on a standard ventilator that breathes much more naturally. Toward the end of the day the settings on this were lowered again and eventually he should be able to be removed from this machine altogether and breathe again for himself.

Tomorrow is a big day. The plan is to remove Keith from his CCRT (renal therapy) machine and roll him down to the hall to have another CAT scan. When that is finished he will be re-located into one of the isolation rooms in the ICU that will protect him from other patient’s germs while he is immunocompromised.

The really big news today was Keith got a bath of sorts and had is hair washed for the first time since the OMPA swim meet. We interpret this to mean is that the nursing staff was looking for something to do – a welcome change from recent events. We laughed that maybe this was a good time to give Keith the Mohawk haircut he has wanted for some time since it should all fall out in a few days anyway.

TUESDAY, AUGUST 22, 2006 10:01 PM, PDT

Parent’s Note:

This was a big day indeed and Keith made small but significant steps toward recovery from his unexpected respiratory crisis. He was disconnected from his CCRT machine and around 10 am he was taken on his bed (along with all of his electronic monitors and pumps) to have another CAT scan. When he returned to the ICU about an hour later he was placed into an isolation room and the doctors decided to keep him off the CCRT and try letting his kidneys resume their job again. Apparently they are working fine – yea!

The biggest news by far is something we were not fully prepared for. The heavy medication that was keeping Keith asleep and comfortable was lightened and he began to respond with head nods and arm wiggles to questions. We have our son back again and it is a true gift. He is indeed such a fighter.

Fewer stern faces and many more smiles from the doctors today. It seems he is recovering faster than even they had hoped for. But even in our joy we must remind ourselves not to forget the larger battle. It may sound odd, but we are looking forward to Keith returning to the hematology / oncology floor where he can focus all of his energy toward resuming his battling with cancer again. The wonderful nurses on the 5th floor are looking forward to having him back again as we all are.

Josie is spending the night with Keith. When I asked him earlier in the day if he wanted a Mohawk he shook his head ‘no’. Maybe he will change his mind…

The doctors have asked us to remind our friends that visiting Keith is not good for him right now because he needs to be kept away from any possible exposure to germs. Still the support our family has received from our community of friends through messages and offers of help is unbelievable. Thanks so much. Oh, there is a bulletin board in Keith’s room again, so when he wakes all of your cards will be there for him.

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This is me...

just before I learned I had cancer

Parent's Note

This site was created to allow Keith's friends and family follow his treatment progress as he fought a difficult cancer. As a parent there are few words more devastating than to hear that your child has cancer. Yet as difficult as this has been for all of us, the experience has opened our eyes not only to Keith's amazing strength of character but to the realization that we too often take life's most simple and beautiful moments for granted.

Keith passed away a little more than a year after initial diagnosis. Despite the outcome we cannot possibly express the gratitude we feel for all who stepped in alongside to help Keith and us with words, deeds and moral support during his incredibly brave ordeal.